Life after Traumatic Brain Injury

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Tag Archives: Trauma and Injuries

Disclaimer: This is MY personal journey, I’m in no way suggesting that what works for me will work for you. My hope is that it will get you thinking about things you may not have considered. Also, this is NOT to replace any medical treatment you are or will be receiving, please continue with any medications and therapies you are currently undertaking. Everything I did was AS WELL AS my neurology, GP and Psychology appointments. Please consult a doctor before starting any exercise programme.

Sorry this post has been a bit delayed but due to appointments and the glorious sunshine we’ve had recently, I was making the most of it by watching the birds in the garden and bothering the bulls in the field across the road.

The body, we all have one that functions with varying degrees of success, mine used to be lean and mean thanks to roller derby and running but when my accident happened I went from enjoying regular exercise to being what I called ‘The Slug’. I had no energy to sit upright on the sofa never mind moving with any sort of speed or agility. There was also the brain injury staple of apathy. Apathy is annoying, no other way around it. It gives you lots of ideas of things to do but then tells you that you don’t want to do any of them. I still have apathy to varying degrees and my activity levels are now ‘my get up and gone’.

Body has been the simplest but hardest (in some ways) part of recovery. I’ve known exactly what I needed to do but it just wouldn’t happen. This is partly due to fear. My trauma makes me believe MOVEMENT IS BAD, I was exercising when it happened so any activity beyond a shuffle became a DANGER ZONE. That voice has been very powerful and hasn’t completely gone yet.

Here’s my list of helpful Body stuff I do/tolerate to keep on moving forwards. Again, like Mind I threw lots at myself and kept what stuck.

1) Running

I used to run up hills for fun, I actually enjoyed running and doing it off road meant I mingled in the beautiful scenery whilst getting fit. Now I wouldn’t even attempt a hill but I do occasionally drag myself out down the lane near the house and run past the sheep. When I first attempted running again post injury it was hilarious, I ran like I was made of wood, arms pinned to my sides, shoulders up to my ears and my head rigid. I was afraid that moving my head whilst running would cause another bleed. I did about half a mile stiff as a board and fretted the whole next day that the aching I was experiencing meant that I’d broken something. BUT, I DID it!

I don’t run half as often as I’d like, it still takes some build up to do it but the notion is pretty much always there in my head and when I do manage it, it feels great.

2) Movement
Well duh yeah! Movement, we all move every day but I’m talking more about purposeful movement. For a long time I didn’t move, I couldn’t move, I was terrified. I was permanently hunched and squished up. As I got better I began to get braver and actually went for a walk round the block, jogged up the stairs, moved my head. I read a lot of books on trauma that all mentioned how it gets trapped in the body (particularly the pelvic region), movement helps to push it through and out. So when the fancy takes me I have a little dance in the house or do some crazy hip rolls and thrusts, it’s not pretty, it looks funny but it does the job. I even purposely spread my arms out and stretch them as far as I can to give myself permission to take up more space. Trauma makes you physically and mentally curl up into a ball, taking up space shows my body it’s safe to be bigger and present in the world.

3) Mindful walking
I wrote a whole blog post on this subject here but this is just delightful. Walking in nature in silence and really being in the Now is comforting, joyful and reconnects you. You spend a lot of time in outer space after trauma, walking through woods and fields and meadows is an umbilical cord back to the earth. Try it, you’ll love it.

4) Massage
Self explanatory, a good massage loosens tension and trauma in the muscles and again it’s another great connector. It makes you aware of your body as a solid, physical object instead of the disconnect you have felt. This reminds me of an exercise I found in a book (Waking the Tiger by Peter Levine) that I still do on occasions when I’m starting to float away again. He said that when you have a shower touch each body part in turn and say for example “This is my head, hello head, I can feel you” etc. it sounds daft but after having no connection to yourself it’s a great way of feeling present and reminding your brain that you have a solid body.

5) Ear plugs and sunglasses
This is another thing that people don’t get told. After brain injury your senses can go crazy, the common ones seem to be eyes and ears. It’s like you get super powered hearing and vision. My hearing is so sensitive now, I can hear EVERYTHING, it’s not that great because it tires me out and can hurt when it becomes too much. Always carry sunglasses and earplugs. They are great for helping to prevent overwhelm when everything gets too loud or bright.

6) Napping
All hail the nap! Napping is a great weapon, don’t ever think because you’re an adult you shouldn’t nap. Nonsense. As long as your naps don’t interfere with your main sleep do them when you need to (as soon as you start finding it difficult to sleep at night, stop the naps for a while, unless you have chronic insomnia and need a bit of a catch up). Try not to nap after 3pm and try to restrict it to no more than half an hour. They are great for topping up your battery and can really help with fatigue, mood, energy and general coping skills. Sleep can be an elusive beast after brain injury (too much, too little and still being tired when you wake) so use the nap to help you. I napped LOADS post surgery and still have them now when I start to feel the drag in my energy. It takes a while to understand your energy use so trial and error with this and you’ll eventually get there.

7) Pilates
This is a recent thing for me, I go to a local PIlates class. It’s a small group in a small hall. Perfect for socially anxious me. When I first went I thought “an exercise class where I can lie down with my eyes shut listening to relaxing music, JACKPOT!” Do not be fooled, Pilates works you hard. It’s helping to unwind and wake up my muscles again after so long in hibernation. The two days after my first class felt like I’d been sat on by an elephant but I went back and there’s real value in my body and me getting to know each other again.

I’m not a particularly festive soul, Christmas and New year are not that special to me. I always seem to find them anti-climatic and the weight of expectation that you’re magically going to wake up to a different you, a different world on Jan 1st is always disappointing. Some may say I’m miserable, I just think it’s just not my bag and that’s ok.

My 2013 has been a mixed bundle, I’ve made some progress but also had times of feeling stuck and helpless in this new world of brain injury. I could make a massive list of resolutions for the coming year but if I’m honest I just want to recover. Properly.

It’s a small yet massive wish as TBI takes it’s own sweet time, I’ve had to learn to try to let go, to try to find that elusive ‘acceptance’, to find new paths and new ways of thinking about life. I’ve lost a lot of my independence and every day isn’t easy but I’m still here fighting.

There’s a saying that if you feel like you’re going through hell, keep going. Well it’s bloody hard sometimes. My PTSD can get triggered by operations and hospital visits (not even mine) and the recent news about Schumacher I have been avoiding to prevent re-experiencing my trauma. Yet it’s still not understood by others why that would still make me feel bad. Why should they understand? After all, their experience is totally different from mine. I am moving towards trying not to be triggered by such things but it takes time. I work hard every day, you can’t rest on your laurels with this. The body stores trauma in the mind and the muscles, it shuts it off initially so you can cope with the immediate impact but it’s all stored in there ready to come out further down the line. I have days where I tremble all day or dissociate or panic or cry it out and I have days where things seem ok. It’s all part of the process. BUT that process takes time, lots of it.

A man called Dr David Bercelli says that logic never resolves trauma, he’s right, you can go over and over it in your head trying to find sense but there is none. Not one bit. It’s overwhelming and unbearable and you go to some very dark places. He says it terrifies us by “unveiling the fragility, precariousness and vulnerability of our humanity, it redefines us and tears at the fabric of our identity”. But and here’s the hope, he also says that “we are then forced into a new way of life, we DO come out the other side but in a new expanded experience of life with maturity and compassion”. I am clinging on to this belief to help me through the tough times.

Coming out the other side, that’s my wish. I think I’m 1/2 of the way there but this last half is the hard work, it’s the exploring the dark corners, facing the enemy right in its fat face knowing that it’s going to hurt but doing it anyway.

So I wish you all a better, brighter 2014 but don’t worry about making too many resolutions and certainly don’t worry if you don’t manage some. I would prefer to say dream don’t plan. Dreaming means your mind can take you anywhere.

Remember you can plan all you like but life sometimes has other ideas.

WARNING: The first set of photos on here will be post surgery, whilst not particularly gruesome they may not be your cup of tea or be a potential trigger. So please do just scroll past if you need to. The rest of the pictures will be safe.

The 1st of October didn’t exist last year, I was unconscious, I could have been floating about in space for all I knew. The next 3 or 4 days also didn’t exist. So whilst everyone else was rushing around, not sleeping and worrying, I was blissfully unaware of everything. Maybe that’s the best way. It does mean however that I have a bit of a memory gap. But anyhow, for an idea of how mad this all was here’s a few piccies of the first week (look away now if you need to).

This was after various tubes had been removed. What a scar eh?

So as you can imagine when I woke up from my extended sleep I was pretty surprised to find myself in hospital. I had no idea why I was there or for how long I had been there.

About 9 days later I was released (after much grumbling by me about the food and getting needles stuck in me all the time) and it was at this point I began thinking I was nearly better and that all I needed was a few nights sleep, even though I was clearly very poorly.

Anyway, this thinking continued for about 7 months, I attempted to go back to work, I attempted nights out and generally thought that all was right with my world.

Then came the stage you have all read about, denial slipped away and I was bereft. I began to face what has been the hardest thing I have ever had to deal with in my life. EVER. You all know this story by now but it was something I was not prepared for. If there’s one thing I would advise out of all of this it’s about being prepared for the psychological impact of trauma. It is a killer. I have had days where I just wanted to curl up and die because it was too painful to bear but hopefully this is something I don’t have to deal with so much anymore. I do worry about the impact of another trauma arriving on the back of this, I’m not sure if I’m strong enough yet to process anything else so I’m crossing fingers for a smooth ride for a while.

Anyhow, back to the point of this post. Moving on, acceptance, closure whatever you want to call it. My aim for the anniversary of my injury yesterday was to stick a pin in it, to use it as a marker for something new. People who have suffered TBI often talk about being ‘reborn’, I understand this a little now.

Mr Braingirl took the day off work and after a potentially triggering hospital visit in the morning (which is a WHOLE other story) we set about merging the past year with a new reality.

After reading lots about grief and recovery I decided to do a few symbolic acts that whilst on the surface may seem a bit trivial and silly, they represented the old me, the wonky brain and a commitment to reclaiming my life. The past year was hijacked by this injury, it stole my life, it stole my joy, it stole me.

One thing I did was to get things that represented the accident and my life before it and burn them.

These were things to do with Roller Derby, things to do with being sick like get well cards. Don’t get me wrong I don’t dislike roller derby now, I burnt these things with love but I needed to create a healthier relationship with what once was my saviour and had now become something I was very afraid of and at one point hated.

Then we got a chocolate cake and stuck some candles in to celebrate a new ‘birthday’.

These small acts, so simple and easy, lifted what had become the third wheel in our life, the passenger we carried whether we wanted to or not. I’m not suggesting life is ever going to be the same or that I’m completely better but I’m getting there and that’s enough for now. The TBI will always be there, I’ll always bear the battle scar but it’s no longer the engulfing shadow it was, instead of blocking my way down the road it will silently tip toe beside me.

Groovy Bruce the rabbit is a welcome and much cherished addition to our little family. He has been great therapy, It gave me something that I HAD to get up for every day. Here he is getting a cuddle.

I would recommend doing a ritual (and a fluffy rabbit) for anyone who is ready to start letting go. It helps to put a bit of a full stop on things.

My next mission is to start getting my energy back and do something for a Brain Injury charity. I’ll let you know when I think of it. I also want to retrain as a Grief and Trauma Counsellor.

Finally (at last!) I just want to say a massive

to everyone who has been there with real and virtual support. Special mention to Diana who has been there through the very dark times and advised, supported and reassured me whenever I needed it (even though she is in San Francisco). Also my family who despite being over the Irish Sea and the Atlantic (Coppard family!) have given me the space and time I’ve needed to find my feet, space to be sad and gently encourage me to look for Lauren again.

And obviously Mr Braingirl, Ian, without whom I simply would not have survived.

My name is Lauren and I am and always will be someone who has had a Traumatic Brain Injury.

There, I said it.

I’ve been in denial for 7 months. 7 months of treating this like a cut knee or a broken nail.
I haven’t been able to read anything about Brain Injury or join support groups because well 1) I was scared and 2) I didn’t think it applied to me.

Life is hard some days. I am depressed, anxious and really bloody tired (mentally and physically). I do get good days but they are fleeting and make the bad even worse. My TBI will be with me now for the rest of my life, I didn’t want to think about this. I didn’t want it to have happened to me.